Why I dislike Christmas

[Daniel]

'I'll be well by the end of 2005' I told myself in that year, the year I fell sick. I thought this because it had happened that way in the preceding year of 2004, when I'd been fortunate enough to get over Gillain Barre (neurological viral illness) in about 4 months and return to China, where it all began, in 2005 and begin my second health-related journey with Bickerstaffs brainstem and limbic encephalitis.

Something always remained in the back of my mind during the 4 hospital stays over a 6 month period both in Asia and here, in Christchurch, New Zealand - 'but this isn't like Gillain Barre Syndrome,' I reminded myself in the moments of sitting on my bed in the hospital, desperately trying to scrawl down my thoughts translated into Chinese - not to look smart, but to ensure I didn't forget what I'd learned and nearly died ascertaining a knowledge of.

2005 passed and turned to 2006. I'd gotten out of the wheelchair in time for its arrival and progressed onto 2 crutches. It was an odd feeling : grateful to be standing upright, but saddened that my pledge of swiftly overcoming encephalitis was then far from being realized.

My birthday, in July 2006, passed with progressing down to a single crutch rather than the two I had been using up to that point. I'd been utilizing a gymnasium since May of that year and, as I heard the neverending dripping tinnitus in my head, and saw literally everything in double, I began to panic as I saw another christmas approach and the full recovery pledge by that point in time diminish by the day until it proved unfruitful when December 25th finally arrived in 2006 and verged on becoming 2007.

I'd say 2007 was the defining year in my recovery. I began to independently bus again as I realized that a recovery was not going to occur by my hope-filled July 2 deadline (birthday), and, as I did so, I learned what feeling exposed and in the public eye again truly felt like as I wasn't ferried everywhere I went once more and charged with getting there independently, still using a crutch and still seeing double.

I learned this through the deepening of a symptom I'd experienced prior to that point in time, but figured it would heal itself soon enough : presyncopal lightheadedness (dizzy headaches). These began to happen regularly at points of stress - crossing roads, lifting weights too heavy at the gym, speaking to people I didn't already know, and getting on and off buses.

Roads to cross became waking nightmares, raising weights at the gym began to feel like putting my life at risk, buying groceries and greeting the checkout operator felt nauseating, but waiting at a bus stop or knowing my destination was coming and it was time to ring the bell for the bus to stop, became an unavoidable and daily ordeal. Get on a bus - nearly faint - get off the bus - nearly faint - exercise at the gym - nearly faint - cross a street on my daily walk - nearly faint - buy vegetables - nearly faint...dizzy...faintheaded...again and again and again.

My optimistic hope of full recovery by a certain point in time died by new years day of 2008 : the dizzy attacks had lessened from 3/day in July of 2007, to once/day at the beginning of 2008 and, as I returned the last crutch to the hospital, I still felt poorly, but improved. This was disappointing, yet uplifting also. High hopes only partially realized in terms of progress, yet not the full recovery I'd hoped for regularly over the previous 2.5 year period.

By February of this year, 2009, I turned up for my first day at my voluntary job at a central city library. It was an extremely uncomfortable and nervous time as I tried desperately to hide my dizziness, sound un-stuttery, think logically and follow commands competently : I failed initially. I now know this to be the result of emotional stress creating the presentation of symptoms as I forgot things easily, sounded terrible when addressing others, and even felt faint when things went wrong.

That was only the first week there, and I felt like I was regressing in recovery. I stuck with it because they weren't paying me to be there and it more or less felt like an opportunity to gain some practice and perhaps some self confidence.
That initial week was the only time I stressed out there and the only time I ever suffered dizziness there also,

'That's interesting,' I told myself as I reflected upon this time after leaving the job 9 months later, 'lightheadedness only happened there once and hasn't at any other place where it has habitually done so since'.

I then realized that an apparent key to overcoming this problem comes in the form of 'oneupsmanship' (I've found) - the road, which can be seen in my videos, where I daily experienced presyncopal lightheadedness while crossing, stopped being a problem as the more stressful point seemed to be turning up to work. The road was less scary than being there, and therefore, less problematic also. The dizziness stopped as my ability to resist points of fear reduced and was eclipsed by seemingly more stressful places like the difference between Charlesworth street and the more stressful workplace.

What I've learned this year about recovery has been invaluable : the brain adapts to improvment and tries its best to improve when challenged to do so : I conquered Charlesworth Street because I found something harder which made that street comparatively easier to negotiate, and I was less emotional (ie nervous) upon arriving there by default. Being less nervous means having a less eratic heartrate, so blood circulates to the brain at a more manageable rate and the occurance of presyncopal lightheadedness lessens until it becomes negligable by default, as it now feels when it hardly ever happens.

I find myself now looking forwards to Christmas. I feel 90% recovered and, though again I've failed to produce the full recovery I had in the back of my mind as hoped for at the start of the year, I know it's now much better than then as I haven't had a full attack of dizziness in 295 days, and my brain appears to have learned that there's not as much to be fearful of now as there was back in 2007, when I first began to independently get out and about once again.

I think the worst feeling in encephalitis is stagnation of progress - having nothing to aspire to or aim for and just existing. There's no room for oneupsmanship in that and no potential for improvment. If you find yourself feeling stagnant, find something realistic to do which you don't normally - read a book inside a month, write a blog to your best ability - it doesn't matter what you say as long as it's coherent, makes the best sense you can possibly achieve, and obviously not racist/sexist/whatever - progress only happens when you know that now feels better than before in doing something, but that only occurs if you actually try to do it in the first place - not much fixes itself on its own.

[Daniel]

Your birthday's on Christmas? That's a real tough one : on one hand, it must feel like the entire world is celebrating your special day, while on the other, there're obviously 364 other days of not much special happening. I'm fortunate in this regard as my birthday is midyear. Of course, being in the US, it'd also be midwinter (unlike here where that time is midsummer), so to have a really special day, where everyone is generally jubilant, while making that day bigger for yourself, I think is better as summertime is always easier to negotiate, I reckon.

Still, christmas is always, to me at least, a major point in the year for reflection. I can see this years one as reflecting upon a pretty successful year of maintaining rehab, progressing, doing 9 months of work experience, and it all seems to eclipse the year before that and the others in recovery also.

Yet, the underlying image in my mind, is one of yet another christmas spent feeling less than ideal. Don't get me wrong, I thank god for all I have and all I've been afforded this year in terms of progress, it just feels like the proverbial photograph sitting in a room of the house and seeing that as a time now passed by and lost to history. I'll have 4 such images this year, my fourth christmas starkly contrasting the other 25 beforehand. This is obviously less than others upon this site, but everyone lives their lives viewed in a different way. I see four years of rigid rehabilitation and a journey of recovery which, while physically easier in an ongoing capacity, is psychologically more difficult with each one which passes by.

I was a complete simpleton in 2005 - infantlike due to encephalitis. I thought to myself, 'next Christmas you'll be well' - December 25th, 2006, I was still simple, but marginally less so than on it's predecessor. By Christmas, 2007, I could see tangeable and significant improvment upon the same time in 2005, but the then 2.5 years post infection made the idea of improving past that point seem like an impossibility as 2008 loomed at hand.

Despite that, the thought of recovering by the same point the following year remained constant, and there was always that thought in the back of my mind, 'but Dan, you're actually better now than you were a year ago' - I both love and hate that thought. I love it because I thank god for its truth, but I loathe it because it condemns me to a mindset of waking up each day for the subsequent 365.25 days thereafter wondering if that will be the day on which I rise and say to myself,

"Halleleuah, 1xrecovery done and dusted, time to get on with life"

It's odd that this year I feel psychologically at the age I am and not the child I was previously, yet I hunger for each passing christmas because that's the historical point in the year, not when free stuff is received, but there's an opportunity to sit down and assess where health is at.

I'm a complete and utter perfectionist, I must admit. To sit on the couch, surrounded by family on December 25th and feel below normality cuts me like a knife. Each year that passes it feels worse as I feel more able - *so* close is how I sometimes feel, yet no cigar......I'm ashamed to say I usually wallow in self pity for a while on that day as the failure of not fulfilling the promise made to myself in the previous year becomes apparent, and I promise the same again,

'Next year, Dan, you'll be sitting by the tree feeling on par with everyone else and no one will need to even consider your plight at that point'

This year is different than the last 4. This year I feel sane and like my age. I realize I often come across on this site as perhaps immature or over doing the silly, but being that way is actually a fantastic coping mechanizm, I find. Why wallow in self pity and misery, when instead you can defiantly extend your middle finger to encephalitis by seeing it lightly?

There're always going to be points where pulling the finger at brain injury is harder than others. Christmas, to me, is the marker of a promise made to myself a year beforehand which I spent every second until the same point the following year pursuing and taking the condition as lightheartedly as I possibly can, while physically trying to put it to the sword. To get to that day and feel anything less than the perfect outcome I envisaged a year beforehand is therefore something which serves as an intense reminder of not being there yet.....close, but still no cigar.

I hunger for christmas 2010. I wonder about where things might be if I remain consistent with my rehab which has produced an intense feeling of coming close this year, such as it has. I'm ashamed to also admit to being somewhat self centred in this regard. Others on this site pledge their devotion to helping others and being supportive. I expect the same attitude of myself, but I'm obsessed with reversing the way this disease feels, and I know it can be improved, and if it can be improved then I'm gonna make darn sure to find out if it can be reversed by this point a year from now.

Those are high hopes for the end of 365.25 days from December 25 of this year. No matter how I try to suppress the temptation to think this way, I've now done so for 4 and a half years and know I won't be able to achieve coming to terms with any sort of permanence of this condition - that's not perfect, and it's not ideal. I choose to smile while I give encephalitis the finger, get up each day and rehab more and more knowing that that day feels better than the one beforehand, and I promise myself again to be well by Christmas 2010, like I promised last year, the one before that, and that, and that again - but this year feels close, and so next year I *will* achieve what I strive for.

CR, thankyou for taking the time to respond to this blog, I greatly appreciate you doing so. I hope all is going well for you at this time and that this Christmas will be a fantastic one for you.

[CR]

Daniel,I have alway's loved christmas.My mother and father made that day so magical for me when I was a child,oh yes that is my birthday as well. I do realize what it represents to you and I am sorry.Having my birthday on Christmas was never nice to me for all the reasons you know already.
I would hope that you will be able to look past getting E on that day and look forward to something wonderful that that day also represents.I can feel that you have conceder mile stones and that is something to be proud of.